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What potential research participants want to know about research: a systematic review.

Kirkby HM, Calvert M, Draper H, Keeley T, Wilson S - BMJ Open (2012)

Bottom Line: Studies were appraised based on the generalisability of results to the UK potential research participant population.Results showed that potential participants wanted to be offered information about result dissemination (91% (95% CI 85% to 95%)), investigator conflicts of interest (48% (95% CI 27% to 69%)), the purpose of the study (76% (95% CI 27% to 100%)), voluntariness (39% (95% CI 2% to 100%)), how long the research would last (61% (95% CI 16% to 97%)), potential benefits (57% (95% CI 7% to 98%)) and confidentiality (44% (95% CI 10% to 82%)).The existing empirical evidence suggests that individuals may have very different needs and a more tailored evidence-based approach may be necessary.

View Article: PubMed Central - PubMed

Affiliation: MRC Midlands Hub for Trials Methodology Research (HTMR), University of Birmingham, Edgbaston, Birmingham, UK.

ABSTRACT

Objective: To establish the empirical evidence base for the information that participants want to know about medical research and to assess how this relates to current guidance from the National Research Ethics Service (NRES).

Data sources: Medline, Web of Science, Applied Social Sciences Index and Abstracts, Sociological abstracts, Health Management Information Consortium, Cochrane Library, thesis index's, grey literature databases, reference and cited article lists, key journals, Google Scholar and correspondence with expert authors.

Study selection: Original research studies published between 1950 and October 2010 that asked potential participants to indicate how much or what types of information they wanted to be told about a research study or asked them to rate the importance of a specific piece of information were included.

Study appraisal and synthesis methods: Studies were appraised based on the generalisability of results to the UK potential research participant population. A metadata analysis using basic thematic analysis was used to split results from papers into themes based on the sections of information that NRES recommends should be included in a participant information sheet.

Results: 14 studies were included. Of the 20 pieces of information that NRES recommend should be included in patient information sheets for research pooled proportions could be calculated for seven themes. Results showed that potential participants wanted to be offered information about result dissemination (91% (95% CI 85% to 95%)), investigator conflicts of interest (48% (95% CI 27% to 69%)), the purpose of the study (76% (95% CI 27% to 100%)), voluntariness (39% (95% CI 2% to 100%)), how long the research would last (61% (95% CI 16% to 97%)), potential benefits (57% (95% CI 7% to 98%)) and confidentiality (44% (95% CI 10% to 82%)). The level of detail participants wanted to know was not explored comprehensively in the studies. There was no empirical evidence to support the level of information provision required by participants on the remaining seven items.

Conclusions: There is limited empirical evidence on what potential participants want to know about research. The existing empirical evidence suggests that individuals may have very different needs and a more tailored evidence-based approach may be necessary.

No MeSH data available.


Results of search strategy and identification of publications included in the review.
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fig1: Results of search strategy and identification of publications included in the review.

Mentions: The search yielded 11 943 unique references. We discarded 11 291 after reviewing the title, 620 after reviewing the abstract and a further 18 after reviewing the full paper (figure 1). HMK conducted the citation screening and TK independently validated approximately 10% of the references identified from electronic databases (96.0% κ agreement rate). All 14 included studies were identified from searches of Medline and Applied Social Sciences Index and Abstracts. Expert authors identified 37 unique references; 13 were duplicates from the electronic searches and 24 did not meet the inclusion criteria.


What potential research participants want to know about research: a systematic review.

Kirkby HM, Calvert M, Draper H, Keeley T, Wilson S - BMJ Open (2012)

Results of search strategy and identification of publications included in the review.
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC3367142&req=5

fig1: Results of search strategy and identification of publications included in the review.
Mentions: The search yielded 11 943 unique references. We discarded 11 291 after reviewing the title, 620 after reviewing the abstract and a further 18 after reviewing the full paper (figure 1). HMK conducted the citation screening and TK independently validated approximately 10% of the references identified from electronic databases (96.0% κ agreement rate). All 14 included studies were identified from searches of Medline and Applied Social Sciences Index and Abstracts. Expert authors identified 37 unique references; 13 were duplicates from the electronic searches and 24 did not meet the inclusion criteria.

Bottom Line: Studies were appraised based on the generalisability of results to the UK potential research participant population.Results showed that potential participants wanted to be offered information about result dissemination (91% (95% CI 85% to 95%)), investigator conflicts of interest (48% (95% CI 27% to 69%)), the purpose of the study (76% (95% CI 27% to 100%)), voluntariness (39% (95% CI 2% to 100%)), how long the research would last (61% (95% CI 16% to 97%)), potential benefits (57% (95% CI 7% to 98%)) and confidentiality (44% (95% CI 10% to 82%)).The existing empirical evidence suggests that individuals may have very different needs and a more tailored evidence-based approach may be necessary.

View Article: PubMed Central - PubMed

Affiliation: MRC Midlands Hub for Trials Methodology Research (HTMR), University of Birmingham, Edgbaston, Birmingham, UK.

ABSTRACT

Objective: To establish the empirical evidence base for the information that participants want to know about medical research and to assess how this relates to current guidance from the National Research Ethics Service (NRES).

Data sources: Medline, Web of Science, Applied Social Sciences Index and Abstracts, Sociological abstracts, Health Management Information Consortium, Cochrane Library, thesis index's, grey literature databases, reference and cited article lists, key journals, Google Scholar and correspondence with expert authors.

Study selection: Original research studies published between 1950 and October 2010 that asked potential participants to indicate how much or what types of information they wanted to be told about a research study or asked them to rate the importance of a specific piece of information were included.

Study appraisal and synthesis methods: Studies were appraised based on the generalisability of results to the UK potential research participant population. A metadata analysis using basic thematic analysis was used to split results from papers into themes based on the sections of information that NRES recommends should be included in a participant information sheet.

Results: 14 studies were included. Of the 20 pieces of information that NRES recommend should be included in patient information sheets for research pooled proportions could be calculated for seven themes. Results showed that potential participants wanted to be offered information about result dissemination (91% (95% CI 85% to 95%)), investigator conflicts of interest (48% (95% CI 27% to 69%)), the purpose of the study (76% (95% CI 27% to 100%)), voluntariness (39% (95% CI 2% to 100%)), how long the research would last (61% (95% CI 16% to 97%)), potential benefits (57% (95% CI 7% to 98%)) and confidentiality (44% (95% CI 10% to 82%)). The level of detail participants wanted to know was not explored comprehensively in the studies. There was no empirical evidence to support the level of information provision required by participants on the remaining seven items.

Conclusions: There is limited empirical evidence on what potential participants want to know about research. The existing empirical evidence suggests that individuals may have very different needs and a more tailored evidence-based approach may be necessary.

No MeSH data available.